Losing and Regaining My Independence After Hip Surgery for Cerebral Palsy

You don’t know what you have until it is taken away.

When your hip is dislocated and you need surgery, you expect the surgeon to fix it so you can carry on living your life at 14 and doing what you love. Well, this is not what happened for me. I have always been as independent as I can living with cerebral palsy — until my hip dislocated and took me on what felt like a never-ending journey.

In March of 2014 I went back to horseback riding after being off for the winter. When I tried to get on the horse, I was unable to because my hip was too sore when I tried to spread my legs around the horse. That winter I had pain off and on in my hip, but my family and I just thought it was a tight muscle; it never occurred to us that there was a problem. Not long after that, we knew something was really wrong. I started to slowly lose my independence due to all my pain.

I finally got in to see the head of orthopedic surgery at McMaster Children’s Hospital, where we found out my hip was dislocated and I needed surgery to fix it. The surgeon told us my hip was going to dislocate sooner or later because it did not grow properly. After hearing this, my mom remembered that I had fallen while walking up onto a deck back in the fall, which is partly what we think caused my hip to dislocate. We also put together that I had a leg length discrepancy and finally realized why my right leg was shorter.

On November 11, 2015 I had my surgery to reconstruct my hip. They put me in a half body cast that went from my ribs to my knees. I came out of the anesthetic with my entire body in full spasm for about five days. I was on so much medication that I was completely out of it. By day five I started to gain consciousness, and I was in so much pain that I was screaming for them to put me out. My mom decided to try giving me weed butter to try and calm my body down because nothing else was working and they were running out of options. The weed butter was the only thing that stopped the spasms and gave me some relief. I stayed in the hospital until November 30.

I was pretty much stuck in my house for four months while I was in the cast. I had to rely on everyone to do everything for me because I could not move or do anything. When I got my cast off, on February 26,2015, my hip was so stiff that we could not move it because it was in so much pain. I had a hip brace to stabilize my hip. The surgeon had no plans for a follow up or rehab, so my mom and I had to figure out the rest on our own.

My mom had heard from a friend about a rehab place in Toronto called Holland Bloorview Kids’ Rehabilitation Hospital. I stayed there from April 21, 2016 to September 18, 2016. The first few nights my mom stayed with me as I got settled in. When my mom was leaving I was sad and a little scared, but once I got to know the nurses and how awesome they all were I felt like it was one big happy family.

Before I got to Bloorview I was struggling with everything that was going on with my body and how it was not working the way I wanted it to. I was also struggling with having all the pain in my hip, and not being independent like I have been my whole life. In the first few months of staying at Bloorview I started to have hope that I would get my life back and have everything go back to “normal.” It took me a long time, but I started to realize the changes in my body were not going to go away on their own. Once I realized this, I was able to accept the changes and try to get through them.

After being at Bloorview for a few weeks, we decided to get me in to see a surgeon at Sick Kids hospital for a consult because my hip was way too sore to be able to put weight on it or use it. Dr. Camp went in to try to fix what the other guy did, which gave me some relief and some more movement, but it did not fix it.

After having the small operation at Sick Kids, I continued to do rehab for a few months until we finally realized that my hip was no longer a working hip. On January 31, 2017 I had my final surgery to have my hip replaced. I remember my mom being able to actually move my hip for the first time in a year with no pain after the surgery. I stayed at the hospital until February 6 and went straight to Bloorview where I started rehab for real. Just under a month after that surgery I was able to get rid of all my pain meds!

By the time I was being discharged from Bloorview on May 4, 2017 I was able to get myself on the toilet and get my own pants on all by myself. I continued to work on my goals after I was discharged, and now I am doing all my own transfers and I am very independent. I am also extremely proud and happy to say that I am officially back to horseback riding lessons!

After going through everything I did, I have learned to appreciate what I am able to do and how calm my body is now. Even though I get tired and annoyed sometimes because it takes me longer and sometimes a lot of effort to do daily things such as using the washroom, I am very thankful because there were times when I did not think I would be able to be independent again.